Caring for Loved Ones with Cancer: What Caregivers Should Know

November 23, 2015 - 10:43 AM

Often, all it takes is a few kind words to help the caregiver of a cancer patient keep going as they provide this vital — and difficult — service to their loved one.

“It’s nice to have someone pat you on the back and tell you that you’re doing a good job,” said Dawn, who is in her 60s and has been caring for her husband since he was diagnosed with a brain tumor three years ago.

Dawn and about 25 other caregivers — the unsung heroes of cancer treatment — recently came together for Caring for Your Loved One with Cancer: A Conference for Caregivers, an event sponsored by JamesCare for Life.

“Cancer is a family disease and impacts everyone in a cancer patient’s family,” said Annie Trance, a JamesCare clinical social worker and one of the organizers of the conference.

“Self-care isn’t a luxury, it’s a necessity,” she said, and much of the conference focused on tips and techniques to help caregivers prepare and plan for their difficult duties.

A common theme was that it’s OK to ask for and accept help from others. Your family and friends want to help, so let them.

“We are all Supermen and feel we can do everything,” said Therese Svarovsky, a certified nurse practitioner in the Division of Palliative Medicine. “That can get you into a pickle, so take off your cape and ask for help.”

The conference provided a long list of ideas, suggestions and strategies to help the caregivers.

Trying to do it all “is the fastest way to burn out,” Trance said. She suggested that when someone offers to help, “have a list ready of things they can do for you … and find time to laugh; when you’re overwhelmed, humor can lift that heaviness.”

Occupational therapists Rachel Walton and Susan Fetherolf discussed cancer-related fatigue and how it can result in a fatigue cycle and spiral out of control. The fatigue cycle occurs when a cancer patient — either during or after treatment — gets more and more tired. They become too tired to get things done, the tasks start to pile up and they get even more stressed out and overwhelmed and even more tired.

“To break the cycle, you need to help them keep a bank account of energy,” Walton explained. “Help them save their energy for when they really need it, to spend it on important things … If it’s important for them to do their own bathing, bank some energy for that. If it’s important for them to cook, bank some energy for that.”

Walton and Fetherolf also discussed Cancer Related Cognitive Dysfunction, which is also known as “chemo brain” and is a result of chemotherapy and other cancer treatments. Often, a cancer patient is too embarrassed to admit to their caregiver that they’re having the memory and cognitive problems associated with chemo brain.

“But they do tell us and we give them validation that chemo brain is real and causes you to forget things,” Walton said. “We teach strategies to get things done, how to compensate.”

Caregivers also get tired. It’s exhausting work because, in many cases, they’re doing all the tasks they normally do, and many (or all) of the tasks the cancer patient once did. Many have to juggle jobs and children along with taking care of a spouse.

“You need a boost,” said Terel Jackson, a music therapist. She then explained that slow, soothing music, while helpful for a cancer patient trying to rest and relax, “may make (the caregiver) even more tired.”

Instead, she had the caregivers clap their hands, sing, move their bodies and play a musical instrument.

“Your body is programmed to match the energy level of the music,” Jackson said, adding music that’s 120 beats per music is just the peppy boost that’s needed and “the body responds with more energy.”

Meals can be a chore, so planning ahead is a must. Jim Warner, director of Nutrition Services, and Anna Maria Bittoni, an outpatient clinical dietician, gave some practical tips and a cooking demonstration.

Bittoni discussed ways to plan out a week of meals in advance. “And you don’t have to do it all by yourself,” she said. “If Thursdays are a tough day for you, ask someone if they can prepare a meal.”

Warner brought a hot plate, pots and knives and showed how to prepare veggies in advance.

“My mom recently had reconstructive knee surgery and I spent a day at her house and made 90 containers for her freezer,” he said. He then cooked and prepared some asparagus, baby carrots and broccoli for the freezer.

“Everything has to go into the freezer already cold,” Warner explained, or moisture will cause freezer burns to form.

The conference reinforced much of what Dawn has learned at previous JamesCare classes and conferences. She did learn something new.

“I really liked the music therapy,” Dawn said, adding she plans on taking a JamesCare class. “It really picks you up and keeps you going. Sometimes you need to move around and listen to the beat.”

She also had some advice for other caregivers: Reach out and ask for some help and take advantage of JamesCare classes.

“They offer so many amazing programs and they’re all for free,” Dawn said. “The only sad part is that they’re not better attended.”